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dkcarl62

Distinguished member
Joined
Nov 12, 2014
Messages
220
Reason
DX UMND/PLS
Diagnosis
03/2015
Country
US
State
mi
City
Novi
Several times a week, usually in the early evening, my nose will stuff up. Like wads of cotton got stuffed up there. Not being able to breath thru my nose drives me crazy!

I've tried everything, saline spray, Flonase, Vicks, antihistamine pills (Zyrtec), decongestant pills (Sudafed) - the only thing that works to open up my nasal passages is decongestant spray - Afrin - the stuff you're not suppose to use for more then 3 days in a row.

I've been lucky so far that this doesn't happen every night. I don't use a bi pap, cough assist, can eat anything but I do use Thick It to swallow pills. My speech is poor. Still understandable - barely.

So my question is - is this MND/ALS or do I need to see an ENT?

Thanks,

Deb
 
Ok this is kind of gross but here's what I do for that same problem.
Get in warm shower run water over face and nose. Take deep breath (this works as breathing exercises as well ) and blow out like crazy with mouth closed. my caregiver assists with blocking One nostril at a time. Repeat as necessary. My nose stays clear rest of day. Also, a tablespoon of apple cider vinegar daily also seems to help with my congestion.
 
I used to use a saline spray and cotton buds to clean out Chris's nose for him at least once daily. For him, it was part of the bulbar issue - the muscles in his entire face would not work so he could blow his nose, even before his breathing strength declined.
His hands were weak so he would say - I can't even pick my own nose!

The difference for him was huge. I would put a couple of puffs of saline up his nose, wait 30 or so seconds, then use a cotton bud to clean his nose out a bit, then the other side, then repeat. It was amazing how much stuff was actually in there.

Before I started doing it for him he tried a long list of things himself that did nothing.
 
Tillie, you are an angel. I'm just amazed by the types of care that I read that CALS lovingly administer to their PALS. As much as my husband loves me, he is just not cut out for this kind of thing. But good info to have to share with aides - maybe it will help! Azgirl, your suggestions are certainly worth a try also. Thanks for your responses!

Deb
 
Deb, my husband had polyps and a deviated septum pre-ALS so for him spraying the nose with alternating agents (saline, Nasalcrom, Nasacort) and then using the baby aspirator worked best.
 
I always said a baby aspirator would work but Chris would laugh at me ... I knew it! :lol:
 
Deb, my husband had polyps and a deviated septum pre-ALS so for him spraying the nose with alternating agents (saline, Nasalcrom, Nasacort) and then using the baby aspirator worked best.

What is a baby aspirator?
 
Alex it is basically a tube with a bulb on the end.
You squeeze the bulb in, then stick the tube into the nose, and let bulb go.

Most people however use ones where the CALS literally puts a tube in their mouth and sucks it out into a container that sits in between you and the CALS.
 
Mmm...unless you've done a study, Tillie, I'd not say the mouth-powered one wins. Likely they both have their points. For those interested, both items can typically be found in the ...wait for it...baby section of a drug store. There are several kinds; on the nasal side, you want the soft silicone and somewhat angled tip.
 
No I haven't done a study, just reporting what CALS have told me in another closed group. I was only providing a bit of feedback on the two main types I know of, not giving my personal opinion which may differ from yours.
 
Steve and we're discussing this issue at 2 am this morning. I finally head into bed to find him laying with his mouth wide open and no bi-pap. I accidentally woke him up by dropping my book. Anyways, he says his sinuses get plugged and he he needs to breathe through his mouth.

He gets up and after a while they clear up so I told him to elevate the head of his bed but he said that doing so make him slip down the bed.

What to do?
 
That's where the hospital beds are great as you can raise a little under the knees and they don't slide down.

When I was first trying to get Chris to elevate his head in our bed I put 2 pillows at the end of the bed (I have a sturdy decorative rail that goes across the bottom of the bed and that helped him both not slide, and use his legs to turn a little as his arms were useless.

Can you prop something at the base of the bed?
 
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